Implementing and evaluating a national integrated digital registry and clinical decision support system in early intervention in psychosis services (Early Psychosis Informatics Into Care): Co-designed protocol

Griffiths, Siân Lowri, Murray, Graham K., Logeswaran, Yanakan, Ainsworth, John, Allan, Sophie M. ORCID:, Campbell, Niyah, Drake, Richard J., Ul Haq Katshu, Mohammad Zia, Machin, Matthew, Pope, Megan A., Sullivan, Sarah A., Waring, Justin, Bogatsu, Tumelo, Kane, Julie, Weetman, Tyler, Johnson, Sonia, Kirkbride, James B. and Upthegrove, Rachel (2024) Implementing and evaluating a national integrated digital registry and clinical decision support system in early intervention in psychosis services (Early Psychosis Informatics Into Care): Co-designed protocol. JMIR Research Protocols, 13 (1). ISSN 1929-0748

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Background: Early intervention in psychosis (EIP) services are nationally mandated in England to provide multidisciplinary care to people experiencing first-episode psychosis, which disproportionately affects deprived and ethnic minority youth. Quality of service provision varies by region, and people from historically underserved populations have unequal access. In other disease areas, including stroke and dementia, national digital registries coupled with clinical decision support systems (CDSSs) have revolutionized the delivery of equitable, evidence-based interventions to transform patient outcomes and reduce population-level disparities in care. Given psychosis is ranked the third most burdensome mental health condition by the World Health Organization, it is essential that we achieve the same parity of health improvements. Objective: This paper reports the protocol for the program development phase of this study, in which we aimed to co-design and produce an evidence-based, stakeholder-informed framework for the building, implementation, piloting, and evaluation of a national integrated digital registry and CDSS for psychosis, known as EPICare (Early Psychosis Informatics into Care). Methods: We conducted 3 concurrent work packages, with reciprocal knowledge exchange between each. In work package 1, using a participatory co-design framework, key stakeholders (clinicians, academics, policy makers, and patient and public contributors) engaged in 4 workshops to review, refine, and identify a core set of essential and desirable measures and features of the EPICare registry and CDSS. Using a modified Delphi approach, we then developed a consensus of data priorities. In work package 2, we collaborated with National Health Service (NHS) informatics teams to identify relevant data currently captured in electronic health records, understand data retrieval methods, and design the software architecture and data model to inform future implementation. In work package 3, observations of stakeholder workshops and individual interviews with representative stakeholders (n=10) were subject to interpretative qualitative analysis, guided by normalization process theory, to identify factors likely to influence the adoption and implementation of EPICare into routine practice. Results: Stage 1 of the EPICare study took place between December 2021 and September 2022. The next steps include stage 2 building, piloting, implementation, and evaluation of EPICare in 5 demonstrator NHS Trusts serving underserved and diverse populations with substantial need for EIP care in England. If successful, this will be followed by stage 3, in which we will seek NHS adoption of EPICare for rollout to all EIP services in England. Conclusions: By establishing a multistakeholder network and engaging them in an iterative co-design process, we have identified essential and desirable elements of the EPICare registry and CDSS; proactively identified and minimized potential challenges and barriers to uptake and implementation; and addressed key questions related to informatics architecture, infrastructure, governance, and integration in diverse NHS Trusts, enabling us to proceed with the building, piloting, implementation, and evaluation of EPICare.

Item Type: Article
Additional Information: Funding Information: Early Psychosis Informatics into Care (EPICare) is fully funded by the National Institute for Health Research (NIHR) Programme Development Grants (PDG) Mental Health Call 2021 (grant NIHR203669). Birmingham Women\u2019s and Children\u2019s National Health Service (NHS) Foundation Trust agreed to act as sponsor for this study. This research is supported by the NIHR Oxford Health Biomedical Research Centre, the NIHR University College London Hospitals (UCLH) Biomedical Research Centre, the NIHR Cambridge Biomedical Research Centre (NIHR203312), and the NIHR Applied Research Collaboration East of England. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Uncontrolled Keywords: clinical decision support system,co-design,decision support,digital registry,early intervention in psychosis,mental health,participatory,participatory co-design,psychiatry,psychosis,registry,study protocol,medicine(all),sdg 3 - good health and well-being ,/dk/atira/pure/subjectarea/asjc/2700
Faculty \ School: Faculty of Medicine and Health Sciences > Norwich Medical School
Faculty of Medicine and Health Sciences > School of Health Sciences
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Depositing User: LivePure Connector
Date Deposited: 19 Jun 2024 08:30
Last Modified: 24 Jun 2024 00:06
DOI: 10.2196/50177


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